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funny because I have been wondering recently why this topic doesn't get discussed more often.especially ageing with hiv as it pertains to LTS.(not to diminish the relevance of this subject to anyone over 50 who is poz)important topic!thanks for the post Bugs!

Great article..one of my biggest questions since my diagnosis is how are the things I'm doing today going to effect me further down the line. I don't have a family history of bad mental nor physical health but I'm a down South Georgia boy who loves my southern foods although they may not b healthy and I have cut back drinking/partying to every other weekend it just seems like the LTS's will once again be the 'guinea pigs' that save my life, I'm sorry if that sounds bad I don't mean for it to, so I want to thank you all for all that you have done and will continue to do because you give me hope

A friend on Facebook commented, "It's definitely not the death sentence it used to be."

I really felt compelled to respond, "for those of us who lost our vitality, whose lives took a decade (or longer) hiatus from society, who sufer still from the effects of the early meds and the PTSD of surviving a plague, it sometimes feels like a death sentence still. Served, ironically, while alive and artificially bolstered through the expensive and dangerous chemicals we still ingest. "

I think we are going to see an awful lot of pozzies 40-60 die in the next few years. Death doesn't tend to like cheating, and it is a patient beast.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

I am happy about every sensible article about HIV. Anything that will help raise awareness of the HIV issue is helpful... especially if it's an article in a much-read newspaper such as the NYT.

At the same time I realize how little I relate to the issues of LTS in general. I'm 34, never knew of anyone openly HIV+ until I walked into Magnets in the Castro for what was supposed to be a routine HIV test, 2 years ago...I've not lost anyone to this awful disease. But reading regularly here in the forums for almost two years has given me quite a bit of insight on the situation of you guys.I hope you don't take this the wrong way but at the same time I am happy that things have changed quite a bit and that most people who get diagnosed these days and have access to healthcare now do witness way fewer of the issues of the past...

I hope you don't take this the wrong way but at the same time I am happy that things have changed quite a bit and that most people who get diagnosed these days and have access to healthcare now do witness way fewer of the issues of the past...

If you guys want to avoid some of the things we LTS deal with it wont be only because there are better treatment or people get treatment earlier . Many of the things we deal with as LTS are caused by the same drugs you guys take . Atripla caused me to get diabetes and many of the other drugs have potential side effects and that can contribute to heart , liver and kidney disease .

Its true that treatments are better but as that article pointed out because of the treatments and because of the inflammation its not over .

I pretty much agree with all that has been said above, but would add a few things.

True, we can't change the past nor can we undo the damage done to us by the old meds - or even the newer meds.

But what also struck me was the isolation and depression reported in the story.

That is one thing we may be able to address.

What would be nice would be the ASOs to come up with LTS support groups. But, with dwindling money, I don't know if that is going to happen.

So, what I would consider doing is taking a page from 80s and doing it ourselves. People like Peter Staley and others in ACT UP didn't wait for some agency to help, they took the ball and ran with it themselves.

(For those who haven't seen, "How to Survive a Plague," I recommend it.)

I, for one, am going to try to start an LTS support/buddy group. I put the slash and buddy on purpose, because we all pretty much know what the score is at this point. The hard part is not having anyone to share time with who also understands.

This could mean that people might opt for a movie night, or a day trip somewhere, or just getting together for coffee.

It may also mean people getting together to go talk about what they are experiencing, knowing that those whom they are talking to get it.

Anyway, I think I will pursue this. There are enough of us in the area that I may be able to get a core group going and then see where it goes.

I pretty much agree with all that has been said above, but would add a few things.

True, we can't change the past nor can we undo the damage done to us by the old meds - or even the newer meds.

But what also struck me was the isolation and depression reported in the story.

That is one thing we may be able to address.

What would be nice would be the ASOs to come up with LTS support groups. But, with dwindling money, I don't know if that is going to happen.

So, what I would consider doing is taking a page from 80s and doing it ourselves. People like Peter Staley and others in ACT UP didn't wait for some agency to help, they took the ball and ran with it themselves.

(For those who haven't seen, "How to Survive a Plague," I recommend it.)

I, for one, am going to try to start an LTS support/buddy group. I put the slash and buddy on purpose, because we all pretty much know what the score is at this point. The hard part is not having anyone to share time with who also understands.

This could mean that people might opt for a movie night, or a day trip somewhere, or just getting together for coffee.

It may also mean people getting together to go talk about what they are experiencing, knowing that those whom they are talking to get it.

Anyway, I think I will pursue this. There are enough of us in the area that I may be able to get a core group going and then see where it goes.

I just don't like the idea of throwing up my hands and giving up.

HUGS,

Mark

great plan Mark!wish it were feasible here. (we are too far from a population center that I would have the energy to travel)meeting others "in the flesh" and in the same boat could be interesting and rewarding for everyone involved.sounds a bit like AMG but local and with a better opportunity to lend a hand in some ways because of proximity.hope it works for you. m.

So, what I would consider doing is taking a page from 80s and doing it ourselves. People like Peter Staley and others in ACT UP didn't wait for some agency to help, they took the ball and ran with it themselves.

(For those who haven't seen, "How to Survive a Plague," I recommend it.)

Thank you Mark, what you said above cannot be said enough.

As I haven't managed to see How to Survive a Plague yet, I don't know if it contains any mention that Peter Staley started these forums (and AIDSmeds.com, now part of POZ.com) back in ... 2000 I think it was.

I bet a lot of people who post here (mainly who joined after 2006 or so) don't realise that along with all the other amazing things Peter did for the poz community, he also started this fantastic resource of information and support.

Unfortunately, many people (not all) coming into the poz fold in recent years seem to take hiv services - and even this forum - for granted. We all need to keep in mind how hard people in the 80s and 90s fought for these services - and how hard we're going to have to continue to fight to keep existing services alive and also create new services to reflect our ageing population and its own special issues.

Funding is a problem just about everywhere these days - but volunteers do not drain finances. I'm sure all of us, even those of us with demanding schedules, can find a few hours a week/month to volunteer in some capacity in order to keep existing services going and also start new services to address needs currently being unmet.

I've recently joined the fight locally - there is no such thing as an ASO here on the Rock. I tried to get something going years ago when I was newly diagnosed, but I was a lone head smashing against brick walls. There are more of us now who are willing to help break down those walls and I think we stand a chance now.

So, what I would consider doing is taking a page from 80s and doing it ourselves. People like Peter Staley and others in ACT UP didn't wait for some agency to help, they took the ball and ran with it themselves.

We need younger people to pick up the torch from the LTS amongst us and run with it. We owe it to them, and we owe it to ourselves as well if we want to live long and prosper with hiv. We all need to stop expecting things to be done for us and start helping each other more.

And by the way, I want to give a special, heartfelt shout-out to Jeff. Without him helping to carry the load here, I wouldn't have the energy - emotional or physical - to put more effort and concentration into local issues. He's saved my sanity and let me tell you - that was a pretty tall order, but Jeff has broad shoulders and he carried me through some dark days and black nights a few months ago. I don't think he realises just how much he helped me. (Sorry to go all soppy on you in public, Jeff, but thank you from the bottom of my heart.)

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

We need younger people to pick up the torch from the LTS amongst us and run with it. We owe it to them, and we owe it to ourselves as well if we want to live long and prosper with hiv. We all need to stop expecting things to be done for us and start helping each other more.

and that can't be said enough! Every time I go to an event (be it as an agitator, activist or advocate) I look around and all I see are 45+ year old people.

It makes me wonder whether those under 40 with HIV don't understand the various parts of the Ryan White Act like housing, quality mgt, or ADAP; or maybe they don't realize how important it is to speak with Legislators to ensure funding from state and federal budgets. I know if ADAP was supplying my meds, I'd take off work a couple days a year to attend rallies and advocacy events to ensure that my state was still going to fund my portion of ADAP. I think too many people must think that somehow this healthcare is due to them; that no one had to fight to get these programs and assistance; that no advocacy is needed to keep it all from expiring; and that no advocacy is needed to create the new programs that will be needed in the future as our needs change thanks to better meds helping us grow older.

great plan Mark!wish it were feasible here. (we are too far from a population center that I would have the energy to travel)

It is a good plan Mark and I hope you can make something happen I'm wondering, Mitch, if this means that a lot of older pozzies will have to make big changes in their lives in their senior years, to move to larger cities to get the assistance they need. Just like it is more difficult getting HIV healthcare in a rural area (where distance and a low population of HIV+ people make a HUGE difference in servies - or should I say lack of services), senior care services for pozzies (many single and/or ill) will be few and far between out in the sticks.

First off - allow me to apologize. Though I have been posting for awhile when I try and quote something from the forums I always end up quoting every post in it. Perhaps someone can give me some pointers or direct me to the instructions for that.

As for having to move to a larger city -I am in exactly that situation right now. I had contemplated a move to coastal Georgia when I was still healthy. ADAP in Georgia is administered by the state and there are no ASO's where I live. When I was still working and had more resources it may have been a good place to live. I find myself now, in a situation where I need more assistance and it doesn't exist here. I'm making the hard decision to move to perhaps Atlanta (I understand AidsAtlanta is great and I do know some people there) or back to the Philadelphia area where I'm familiar with the various options and there are a number of great community resources.

In short, the time is already here where older, long term survivors are having to make the decision to move to the larger metropolitan areas.

and that can't be said enough! Every time I go to an event (be it as an agitator, activist or advocate) I look around and all I see are 45+ year old people.

It makes me wonder whether those under 40 with HIV don't understand the various parts of the Ryan White Act like housing, quality mgt, or ADAP; or maybe they don't realize how important it is to speak with Legislators to ensure funding from state and federal budgets. I know if ADAP was supplying my meds, I'd take off work a couple days a year to attend rallies and advocacy events to ensure that my state was still going to fund my portion of ADAP. I think too many people must think that somehow this healthcare is due to them; that no one had to fight to get these programs and assistance; that no advocacy is needed to keep it all from expiring; and that no advocacy is needed to create the new programs that will be needed in the future as our needs change thanks to better meds helping us grow older.It is a good plan Mark and I hope you can make something happen I'm wondering, Mitch, if this means that a lot of older pozzies will have to make big changes in their lives in their senior years, to move to larger cities to get the assistance they need. Just like it is more difficult getting HIV healthcare in a rural area (where distance and a low population of HIV+ people make a HUGE difference in servies - or should I say lack of services), senior care services for pozzies (many single and/or ill) will be few and far between out in the sticks.

PEOPLE LIKE ME DO NOT HAVE RYAN WHITE AS MOST DO !THE HEAD HONCHO HAS HIV ( Missouri ) BUT DOES NOT FEEL PEOPLE THAT LIVE BETTER THAN HE DOES DESERVE TO HAVE THE SAME BENEFITS HE HAS ! PISSES ME OFF ! BIG TIME !

and that can't be said enough! Every time I go to an event (be it as an agitator, activist or advocate) I look around and all I see are 45+ year old people.

It makes me wonder whether those under 40 with HIV don't understand the various parts of the Ryan White Act like housing, quality mgt, or ADAP; or maybe they don't realize how important it is to speak with Legislators to ensure funding from state and federal budgets.

People experience HIV (and life) in very different ways depending on where they are on the socioeconomic spectrum. The real question is how do you get those with access to power to be interested in those without.

I'm basing this line of questioning just off my own experience, so any actual facts are appreciated: how many of those under 40s do you think actually use these services or would care if they disappeared? I would imagine the vast majority of the people using them are the unemployed, the addicted, the destitute, the mentally ill and various combinations of those. No one cares about these people, and we aren't great advocates for ourselves. I would imagine most middle class 30-somethings who happen to test positive just go about their lives and simply don't use ADAP, Ryan White, etc. etc. Of course, "middle class" may mean something else to me than it does to you.

Interesting point. Are you proposing that people 18-25 have access to, and intend to hang on to health insurance capable of sustaining the long term care an HIV diagnosis and treatment thereof presents?

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

I would imagine most middle class 30-somethings who happen to test positive just go about their lives and simply don't use ADAP, Ryan White, etc. etc.

ADAP can pay insurance premiums, enabling people to receive meds and stay on their jobs with their insurance policies.

However HIV has often brought poverty along in it's wake, so many pozzies actually do use these services. Up to 1/3 of HIV positive people aren't diagnosed until the present at a hospital, already ill. HIV/illness/hospital (not to mention lost time at work before diagnosis and during recovery) can quickly deplete the finances/insurance of those "middle class 30-somethings who happen to test positive" and force them into using these essential services.

I'll have to do some research; but I used to have a graph about how much poverty and HIV go hand-in-hand - even here in America. It shows that a rather high percentage (>75%) of pozzies meet the financial requirments and use some type of assistance to obtain their healthcare. (I wish I could remember the correct numbers or find that report. Bah! I have so much damned HIV-related info on my computer and in my head LOL This is not the link I was looking for yet; but it has a good deal to say about HIV and poverty in America)

ain't that the truth! When I first arrived in SC I attended an ADAP rally at the State House. There was all of about 200 people there. As I began to talk to them, I realized most were case mgrs, social workers, clinicians, ASO staff, etc. All folks actually getting paid to be there. There was one other guy and me, who were consumers/clients/volunteers/pozzies who did not use ADAP and weren't there as part of our job. All in all, there were only 2 people in attendance who actually used ADAP.

Out of 2119 on the SC ADAP roles, at that time, only TWO could show up to request that our state gov't keep funding ADAP. Where were the other 2117?? I see them in the clinics around the state. I see that about half are under 50, so where are the advocates/activists among them?

I guess it was easier for me to be an advocate when I was a "middle class 30-something" and all my friends were dying around me from AIDS because we had no meds. I'm so afraid that the younger generation won't take up the cause until these services are gone, there is no access to meds, and their friends start dying. Sheesh! It would be so much easier for them to step in my shoes and keep up the fight that's already been going for 30 yrs.

Interesting point. Are you proposing that people 18-25 have access to, and intend to hang on to health insurance capable of sustaining the long term care an HIV diagnosis and treatment thereof presents?

I was thinking of economically stable 30-somethings in particular, but it could apply to any age, I guess.

I'm not saying anything is a fact one way or the other. What matters as far as their actions are concerned is what they believe to be true. It's possible they believe they don't have and will not have use for these services and are therefore unconcerned: "It's for poor people and sick people [sic] to worry about."

I'm saying it's possible, mind you. It's also possible that:

1) They do care but assume it's taken care of and that we're legislatively protected.2) They do care and know there's a problem but feel powerless to do anything.3) They do care but are too caught up in their own economic concerns to have what they see as the luxury of worrying about broader social issues.4) &c.

Each of these would require different interventions if we wanted to instigate change and encourage more of this demographic to take action.

Out of 2119 on the SC ADAP roles, at that time, only TWO could show up to request that our state gov't keep funding ADAP. Where were the other 2117?? I see them in the clinics around the state. I see that about half are under 50, so where are the advocates/activists among them?

When I was living in the least sheltery of the two homeless shelters I've stayed in this year, someone from the staff organized an "advocacy day" during which we were supposed to go downtown for a meet-and-greet with city council members regarding rent caps and diminishing benefits. (Full disclosure: I don't get HIV-related benefits, and my HASA case is apparently being closed now that I'm not homeless.)

I signed up, but saw no other names on the list - even on the day it happened. I don't know who did go, because I also ended up not going. I had a doctor's appointment, felt pretty crappy generally and assumed it was cancelled due to no interest. I should have inquired.

Oftentimes the people who get these services are pretty low - physically, socially and mental-health-wise. Keep in mind, of course, many can't even (or don't want to) adhere to their own ART. Asking them to head downtown to shake Mr. City Council's hand is sometimes a bigger deal than it might seem. I'm sure there are things people higher up (even if only 1 inch higher up) the social totem pole could do to facilitate getting this done, though, if only the approach were right. Cue the motivation theory scholars.

As for me personally, if I knew a single other person who was active, I'd have little trouble being active with that person. But I have a hard enough time just saying 'hello' to strangers. Being enzymatic to a social movement is a tall order.

if you meet those requirements and are not being given ADAP assistance, you should file grievances at the state AND federal levels

I am constantly surprised at the different levels of service in different states. When I resided in Pennsylvania and worked full time I still received SPBP benefits. Although I had great health insurance my co pays came to $100 a month. SPBP (Pennsylvania's Ryan White Care Act) picked up my co pays. At that time I think the cut off point for that service was $80K. I was making about half of that and $100 a month was a lot though I could have managed to pay it myself. SPBP also picked up the appointment cost for Sculptra treatments though that may have changed. It all depends how much if anything the individual state matches the federal funds.

As regards healthy 30 year olds being involved in the political process I was not. However, for years I volunteered at an ASO always with direct services. I worked with ActionAids Immediate Seating program and also administered their donations-in-kind program. Later in life I did grant writing and event planning for another gay charity. Most ASO's no longer provide direct services. The need for client representation has become too great and they can't do it all.

I do think healthy poz people use services but it depends on where they live.

The gay political movement has moved much more toward marriage equality in recent years. It is a "feel good" movement and politics is the world of the possible.

The financial burden of considerable costs, availability of services to help, and other personal challenges for those of us with HIV are undeniable.

Recently, I have been thinking about my long term HIV status and continuing physical and financial viability.

I know that I am extremely fortunate to feel well, have good labs, and be able to work.

However, I also know that as I get older my personal landscape will change.

I am between permanent full time work but have been fortunate to get consulting projects with decent pay to allow me to continue my health insurance through COBRA and pay other bills while I look for full-time permanent work (ageism and other challenges notwithstanding) with health coverage.

This discussion is invaluable. I am also gathering information from other sources as I want to approach my situation with clear eyes, good information and hopefully available and helpful options.

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"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

The financial burden of considerable costs, availability of services to help, and other personal challenges for those of us with HIV are undeniable.

Recently, I have been thinking about my long term HIV status and continuing physical and financial viability.

You know how people say they "have nothing to lose", meaning they're willing to make fools of themselves or take whatever chance because they just don't care? Well, for a while I had nothing to lose, and even now I have so little to lose that I just. don't. care.

Even so, the one thing I'm really worried about is that one day I'll go to get a prescription filled and they'll tell me my Medicaid number isn't working anymore. I feel like I have no control over the source of my health, and with no employment (read: health insurance) opportunities on the horizon, that's pretty terrifying. I actually have honest-to-god nightmares about it.

It's an interesting system we've made for ourselves. As good as the healthcare may or may not be, the insecurity it creates and resulting stress is counter to the very health it purports to serve.

I'm wondering, Mitch, if this means that a lot of older pozzies will have to make big changes in their lives in their senior years, to move to larger cities to get the assistance they need. Just like it is more difficult getting HIV healthcare in a rural area (where distance and a low population of HIV+ people make a HUGE difference in servies - or should I say lack of services), senior care services for pozzies (many single and/or ill) will be few and far between out in the sticks.

Probably for many but while we are somewhat "out in the sticks" in Connecticut, it's a very small state.I travel about 35 minutes for most of my hiv related care.

What I have been thinking more about lately is what we should be doing after we retire. (well, when Kenny decides to retire. .)Being in a relationship when your partner in negative can have issues in regards to the timing of retirement.I don't want to stop him from enjoying work, but on the other hand I would like to spend more time together (without the stress of his working) while I am able.Time seems to be moving MUCH faster for me.

I could picture us down sizing in the not too distant future and moving to a more metropolitan area.Health care would be a major factor in the choice of location.Affordability another.Ten years ago the economy and my health were both in a better state.The past 10 years have been a bigger challenge than expected with my health as well as saving for retirement.

I remember hearing a comment from someone a couple of years ago that stuck in my mind.An older gay couple were eating the "early bird special" and this guy said to his friend (talking about the couple), "that's what happens when you have to live on $30,000 a year".

With uncertain funding of health programs and an unpredictable health outlook it is difficult to even start to make a plan.Aging with hiv has many facets.Poverty in old age with poor health is a depressing thought and a reality to many.It may some day be my future.